LostinTX
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LostinTX

Member, Female, from TX

Did a self test this morning videoing myself turning left in bed and I still have slight nystagmus? Almost 3 years in? Sep 10, 2023

    1. SharonBell
      SharonBell
      @LostinTX ,@Hottopic29,@KaleeTX, @Rockman,@Wrfortiscue,@Steph1710, @Orians Pain, @aura, does food, alcohol, salt, sugar, caffeine or any foods affect your tinnitus? Everything affects mine.
      1. View previous comments...
      2. 4Grace
        4Grace
        @SharonBell - all of it. The more time passes the more foods impact my ears. I cannot have an inch of wine. I’m talking bad spike for days. Actually feels like a permanent worsening at this point. All the foods you mention. We are the same. My ears are like glass.
        Jan 18, 2024
        SharonBell likes this.
      3. LostinTX
        LostinTX
        @SharonBell it does every now and then. Alcohol actually helps me sometimes lower it and calm me down. I ate a bunch of sugar cookies yesterday which I haven't done in months and i woke up to louder buzzing. It's calmed back down now. Coffee doesn't affect me at all and I had given it up for almost 2 years at T onset.
        Jan 19, 2024
        4Grace and SharonBell like this.
      4. Hottopic29
        Hottopic29
        Yea i find if i don't eat at all and limited for few days its lower
        Jan 23, 2024
        SharonBell likes this.
    2. LostinTX
      LostinTX
      Did a self test this morning videoing myself turning left in bed and I still have slight nystagmus? Almost 3 years in?
    3. LostinTX
      LostinTX
      I have checked the FDA site for medical devices awaiting approval 2x and have not seen Susan Shore's device there?
      1. gameover likes this.
      2. DimLeb
        DimLeb
        They simply haven't submitted it for whatever reason.
        Sep 4, 2023
        gameover likes this.
      3. SharonBell
        SharonBell
        @LostinTX it’s like everything they have has to go in your ears. That scares me because I can’t even wear earplugs or headphones because that’s all I hear is my T and then it sizzles so it gets so much worse and with their inventions I could not use it when it goes in the ears I hate it. Most people with T can use ear plugs some it makes their T louder, but mine it sizzles in my head.
        Jan 19, 2024
    4. LostinTX
      LostinTX
      Huge spike yesterday hormone change. In 2 years -4 light periods. Peri/Menopause. Oddly, started a heavy period. T was louder than traffic
      1. SharonBell likes this.
      2. SharonBell
        SharonBell
        @LostinTX I’m going through menopause also do you think our T will get better when mentapause is over?
        Jan 19, 2024
        Juliane likes this.
    5. LostinTX
      LostinTX
      Really down today. I am no longer the person I was and this constant buzzing in my head has destroyed me. Some good moments but I want peace
      1. View previous comments...
      2. LostinTX
        LostinTX
        I keep trying but it's hard. I even try to see the bright side that it has gone down in volume monumentally from the beginning. But I started out severe/catastrophic and now completely feel I have PTSD from it knowing how LOUD it can go.
        Jan 2, 2023
      3. LostinTX
        LostinTX
        It's like knowing you have a grenade in your head that can go off anytime the rest of your life. I was that person that slept in complete dark and silence every night and you grieve all the moments you took for granted.
        Jan 2, 2023
      4. SharonBell
        SharonBell
        @LostinTX you said you have constant buzzing in your head. Mine is in my ears and head constant.Do you mean it’s on like the top of your head or your whole head?
        Jan 19, 2024
    6. LostinTX
      LostinTX
      I have had 2 times now eating out that I could not hear T the entire meal! Christmas Eve dinner and I took my mom to breakfast this week.
    7. LostinTX
      LostinTX
      Still not ok with T! But, I went from hearing over EVERYTHING to some days I can't hear in the store or driving. Another year maybe lower?!
      1. SharonBell, Marshall, Ngo13 and 4 others like this.
    8. LostinTX
      LostinTX
      Sleeping 8 hours nightly now with gabapentin, cyclobenzaprine and melatonin combo. I also take PNN NeuroAid I think is helping T/my brain.
      1. SharonBell
        SharonBell
        @LostinTX I have been taking flexeril at night to help me sleep too. I have been taking it for a couple years on and off when I need it for my back, but lately I have taking it to help me sleep.
        Jan 17, 2024
      2. LostinTX
        LostinTX
        @SharonBell i no longer take it and haven't for maybe over 6 months. I now take one 300mg gabapentin and 10-15mg of melatonin and I sleep solid 6-8 hours now
        Jan 19, 2024
        SharonBell likes this.
    9. LostinTX
    10. LostinTX
      LostinTX
      Been using gabapentin regularly for sleep and my T is a lower hiss all day. I hope it keeps decreasing and disappears one day. Pray daily.
      1. SharonBell, CRGC, JPGL and 8 others like this.
      2. SharonBell
        SharonBell
        Jan 17, 2024
      3. SharonBell
        SharonBell
        @LostinTX can I ask why you quit taking flexeril?
        Jan 19, 2024
    11. LostinTX
      LostinTX
      I had a huge spike today. A few things- I stopped HRT 3 days ago to see how it would go? Then got a possible vestibular migraine
      1. JPGL, NYCGuy and Daniel Lion like this.
      2. BrOKeN_1
        BrOKeN_1
        Stress maybe? Anxious about what may be? Our brains are goofy goober for sure. Hope it recedes quickly for you.
        Sep 8, 2022
        JPGL likes this.
      3. BrOKeN_1
        BrOKeN_1
        I would really like to taper off ssri myself due to the possible ototoxic properties but due to my obsessive compulsive nature I'm afraid I would end up spiraling.
        Sep 8, 2022
        JPGL and LostinTX like this.
      4. LostinTX
        LostinTX
        @BrOKeN_1 it's hard to get off SSRI's for sure. I've been on HRT (hormone replacement for several months but I've gained weight easily and thought I'd try being off it and see how it goes. I guess it helps the T too though, maybe? Thank God today was better but I've had 3 possible vestibular migraines in the 22 months of T and they are debilitating when they happen. Thankful they are rare.
        Sep 9, 2022
        JPGL likes this.
    12. LostinTX
      LostinTX
      Just found out my OTO-313 was placebo! Kinda shocked. If I've been healing on my own I pray I continue to until it's mild or ignorable.
      1. JPGL, NTV, Daniel Lion and 8 others like this.
      2. JPGL
        JPGL
        How did you know ?
        Sep 7, 2022
      3. Wrfortiscue
        Wrfortiscue
        Oh my! Hopefully you continue that trend
        Sep 7, 2022
        ZFire likes this.
      4. LostinTX
        LostinTX
        @JPGL I reached out to the researcher. The study was unblinded and she was able to share with me what I got.
        Sep 7, 2022
        JPGL, NYCGuy, ZFire and 2 others like this.
    13. LostinTX
      LostinTX
      22 months. Yesterday went to a friend's for small get together. Could hardly hear the T. Last year there 10/21 I had to leave bc T was bad
    14. LostinTX
      LostinTX
      Yesterday was a bad spike too. Went to flea market and could hear it over the mariachi music blaring. My mom's was spiked too Bar. Pressure?
      1. JPGL and NYCGuy like this.
      2. SharonBell
        SharonBell
        Yeah I can’t be around loud things. Makes mine worse and can’t wear ear plugs because it makes my head sizzle.
        Jan 17, 2024
    15. LostinTX
      LostinTX
      Was let go from my job 8/24. I couldn't keep up my performance because of T and all the depression. Already have new certs for new jobs :)
      1. JPGL, Marshall, NYCGuy and 1 other person like this.
    16. LostinTX
      LostinTX
      Last night I watched a movie without phone next to me playing masking noises. Little victories.
      1. SharonBell, JPGL, NYCGuy and 6 others like this.
      2. View previous comments...
      3. ZFire
        ZFire
        Aug 24, 2022
        LostinTX likes this.
      4. SharonBell
        SharonBell
        @LostonTX I use my phone to all day for sound therapy. My problem is I can’t sit there and relax because my anxiety is bad from the T, I’m not sure how to explain it, but I guess I’m scared of my T, I feel like a difference person and I havnt accepted it.
        Jan 17, 2024
      5. SharonBell
        SharonBell
        @LostinTX do you have any suggestions that would help me? My T is in both ears and my head. It buzzes-static electricity all day 24/7, mine is the same except when it gets louder.
        Jan 17, 2024
    17. LostinTX
      LostinTX
      2 days in a row it's been pretty mild. Low level hissing. Took 2 gabapentin last night and dreams were crazy AF! Had watched Eyes Wide Shut
      1. Rockman, ZFire, NYCGuy and 3 others like this.
      2. Wrfortiscue
        Wrfortiscue
        What kinda dreams
        Aug 17, 2022
        Rockman, ZFire and Joe Cuber like this.
      3. LostinTX
        LostinTX
        Aug 17, 2022
    18. LostinTX
      LostinTX
      Will Shore's device help only people that can modulate their T? Please say it will include regular T too! :(
      1. NYCGuy likes this.
      2. kingsfan
        kingsfan
        I think several people have written here that Dr Shore stated it's likely it will, just that she isn't testing for it right now to keep parameters constrained.
        Aug 11, 2022
        LostinTX and NYCGuy like this.
    19. LostinTX
      LostinTX
      The researcher for the OTO-313 study reached out to me and said they will unblind and I'll be able to find out what I got at an unknown date
      1. kingsfan
        kingsfan
        Is it okay to ask what you think you may have been given?
        Aug 11, 2022
        NYCGuy likes this.
      2. LostinTX
        LostinTX
        @kingsfan i think i was given the drug but could be wrong. My T was loud over everything and i had horrible insomnia for a year no matter what i took! Ambien couldn't even knock me out for more than 2-3 hours. 2 weeks after the shot i started sleeping better and the volume went from severe to moderate over 2-3 months after
        Aug 11, 2022
        SharonBell and Gabriel5050 like this.
    20. LostinTX
      LostinTX
      2 nights crap sleep again and my head is buzzing loud AF today. FML I am so sick of this. I can't do this the rest of my life. 20 months
      1. NYCGuy, Joe Cuber and Wrfortiscue like this.
      2. LostinTX
        LostinTX
        @Joe Cuber I'm sorry and know how you feel. I had to take 3/4 of a .5mg klonipin today. It helped and I was then able to get outside and walk my dogs a mile which I haven't done in weeks due to catching covid and being sick 2 weeks. Hope your day gets better too!
        Aug 11, 2022
        Joe Cuber likes this.
      3. SharonBell
        SharonBell
        @LostinTX did you do an experiment? I saw you talking about the oto313 study.
        Jan 17, 2024
    21. LostinTX
      LostinTX
      Still not 100% recovered from covid. The sinus congestion and crap coming up is just neverending. 12 days now. Hopefully it fully goes soon
      1. ThomasF and NYCGuy like this.
      2. SharonBell
        SharonBell
        @LostinTX I got my tinnitus from Covid. I had it twice in 2021-2022 and then had another really bad virus in January of 2023.
        Jan 17, 2024
      3. SharonBell
        SharonBell
        @LostinTX Did it make your t worse? My husbands brother-in-law had Covid and his T was worse, but I think it’s gone back down now. I wear my mask everywhere I’m so scared of getting Covid again it terrifies me.
        Jan 17, 2024
      4. LostinTX
        LostinTX
        @SharonBell no it did not make it permanently worse. Every time I've caught it I've taken ivermectin and other antivirals like lysine, oil of oregano and cat's claw
        Jan 19, 2024
        SharonBell likes this.
    22. LostinTX
      LostinTX
      Covid turned into MASSIVE sinus infection. Steroid shot, oral prednisone and amoxicillin. It's helping but I think I won't be 100% for weeks
      1. Wrfortiscue likes this.
    23. LostinTX
      LostinTX
      AND it's COVID! Ugh! Last time I was asymptomatic. This time it's like the flu with a bad sinus infection like I once had13 years ago.
      1. NYCGuy and Wrfortiscue like this.
      2. BrOKeN_1
        BrOKeN_1
        Hang in there.. the body aches were the worse for me. Like getting hit by a truck. I lay in bed for three days!
        Jul 28, 2022
        SharonBell, LostinTX and NYCGuy like this.
    24. LostinTX
      LostinTX
      My right (good ear) is clogged with fluid. Woke up last night hearing in that ear was like 40% less than right. if i do valsava it squeals
      1. View previous comments...
      2. Wrfortiscue
        Wrfortiscue
        @ZFire yeah I’m guessing. Usually it’s the same story. Blows too hard, hears a pop then loud ringing
        Jul 27, 2022
        Damocles and ZFire like this.
      3. Damocles
        Damocles
        Barotrauma, @ZFire.

        Ruptured the eardrum in my right ear when I was nine, doing it.

        And like @Wrfortiscue said, far too many negative anecdotal accounts around, in relation to tinnitus, for it to be something I would recommend.
        Jul 27, 2022
        Wrfortiscue and ZFire like this.
      4. LostinTX
        LostinTX
        Yeah I read those stories and made a point to not blow too hard, but the pressure was so bad
        Jul 28, 2022
        Wrfortiscue likes this.
    25. LostinTX
      LostinTX
      Yesterday wasn't too bad and then I got sick. LOUD AF last night and this morning all over head high pitch buzzing. Can't imagine this years
      1. NYCGuy and Wrfortiscue like this.
      2. Damocles
        Damocles
        Most viruses will decrease hearing + increase tinnitus (temporarily) = spikesville.

        I recommend Quercetin to speed up recovery from the infection.

        And try not to stress over the spike, as that's going to negatively impact your immune system.
        Jul 26, 2022
        Steph1710, LostinTX and Wrfortiscue like this.
      3. LostinTX
        LostinTX
        @Damocles thank you. I think I have some in our medicine cabinet. Yeah this has made me spin out to a bad place today wondering how long I can continue with this loud shit and really not want to keep going. It also sounds like I have laryngitis from whatever this is.
        Jul 26, 2022
        Damocles likes this.
    26. LostinTX
      LostinTX
      Spiked bad yesterday, bath running could still hear it! Mom and daughter very sick! Theytook c19 test neg. Downing lysine to fight it off.
      1. Wrfortiscue likes this.
    27. LostinTX
      LostinTX
      Read a story this person's loudness was 9-13db. No wonder they "hardly ever think about it" after 2 years. I was measured 56db 12/2020. F me
      1. Wrfortiscue
        Wrfortiscue
        How do you measure?
        Jul 22, 2022
      2. LostinTX
        LostinTX
        @Wrfortiscue an audiologist at UTSW here did. After the audiogram they play noises to mask. I guess they call it MML? where i've seen it mentioned before. My report showed 56db even though at that time I told them nothing masked during the exam? I know it's much lower than when i had that exam, but I still have horrible spikes!
        Jul 22, 2022
    28. LostinTX
      LostinTX
      the highly recommended audiologist I had a televisit with today said it sounds like a virus attacked my ear from my explanation of events
      1. SharonBell and Wrfortiscue like this.
      2. Wrfortiscue
        Wrfortiscue
        Any treatment options they recommended?
        Jul 21, 2022
        NYCGuy likes this.
      3. LostinTX
        LostinTX
        only Widex hearing aids for sound therapy and the whole package with treatment expensive AF $5K after insurance
        Jul 22, 2022
        SharonBell likes this.
    29. LostinTX
      LostinTX
      My sleep has been broken again the past 3 nights or so. I was doing so well for MONTHS. Please don't let me be on the rollercoaster again
      1. MartinPihl and martinberryhorse like this.
      2. View previous comments...
      3. LostinTX
        LostinTX
        @martinberryhorse I feel ya. I was on that horrible rollercoaster no sleep for a year from T onset. Thankfully, I got 7 hours straight before waking last night. Hope it holds! But I do heavily medicate to sleep :(
        Jul 11, 2022
        martinberryhorse likes this.
      4. MartinPihl
        MartinPihl
        I can totally relate to that. Do not fall into despair though. I have been through that countless times, but i always get back to the good sleep... though it may take som time.
        Jul 11, 2022
        LostinTX and martinberryhorse like this.
      5. SharonBell
        SharonBell
        @LostinTX how was your hearing test? Do you have any hearing loss? I saw you said, the audiologist thinks it was a virus.
        Jan 17, 2024
    30. LostinTX
      LostinTX
      Why couldn't I be someone with "minor" T?! Irks me when people say they're suicidal from hearing it at night. I hear it almost always :(
      1. Wrfortiscue
        Wrfortiscue
        Sucks huh
        Jul 9, 2022
        martinberryhorse and LostinTX like this.
      2. BrOKeN_1
        BrOKeN_1
        It's frustrating for sure.. takes me all day to adjust. Then overnight it ramps up just to start the whole process over agian
        Jul 9, 2022
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  • About

    Gender:
    Female
    Location:
    TX
    Tinnitus Since:
    11/2020
    Cause of Tinnitus:
    poss ototoxicity/unknown/BVVP diagnosed first then tinnitus